Crossroads

Where do I begin? And how do I adequately describe the crossroads at which we are currently at with Emma's care?  

Emma has always been seen as complicated and complex. I guess you could say that Scott and I have just learned to accept that....embrace it even....and work hard to try to find specialists to understand her unique anatomy and the way she responds to surgery, procedures, and medications.  However, that doesn't make this process any easier. You see, we came to Boston to see the number one doctors in the world in the pediatric cardiology realm.....hoping that Emma wouldn't be quite such an anomaly.  

The team here has work tirelessly to try to improve her cardiac function to give Emma the best chance possible with her current heart. What we have come to realize is that she is even stumping the best of the best.  We hear day after day that the way Emma is responding to surgeries and medications are just so unique and even more so frustrating to the team. 

They care deeply about Emma just as her   Dallas team did and it is extremely frustrating to them that they can't figure out how to improve the cardiac and pulmonary function. I told her cardiologist, here in Boston,  that I felt like we were in a déjà vu nightmare. I said this because several years ago after her Glenn and Cath  we were in the spot where Emma's  body was rejecting the surgery and despite making obvious changes that should have made her heart better, Emma's body is rejecting the surgery again. Not only that, but for some reason her left lung is not getting much blood flow despite her left pulmonary artery and pulmonary veins looking fine.  

So, where does that leave us.  Well, right now Emma is not a surgical or transplant candidate.  Her body has been through a lot over the past several months and there are several issues with her heart and lungs that are no where near being fully sorted out.  Please understand that this in NO WAY means that the team or Scott and I are giving up on Emma.  Everyone is hopeful that her body will recover and her heart will strengthen; however, we are all very realistic that her journey will continue to get harder and our options will come with more risk and less success.  For instance, one of the only surgical options left to consider has only been done to around 20 kids...3 of those being successful.  

In the meantime, Scott and I focus on today. We focus on what we can do medically to bring Emma back to some sort of normalcy.  Basically, getting Em back on feeds, enteral meds, stable kidneys, bone health, development issues, et . 

Please bear with us a navigate these stormy waters.  Decisions Scott and I are making are not always favorable or easy.  Know that we are doing a lot of praying and leaning on our Heavenly Father for support, wisdom, and guidance. 

God is good!  All the time! God is good! 

Post Cath Update 2

This will be brief....Emma had a rough night and is fighting very low blood pressures despite being on medications that help boost blood pressure.  Emma is also running a fairly high fever that we are having problems bringing down.  Also, Emma's belly has gotten huge...and of course we don't know why.

Today's plan is to take Emma to IR to attempt another PICC line and try to determine why her belly is so big.

Overall, it has been a very frustrating night.  We hate that Emma has taken so many steps backwards.  

Please pray:

1. Blood pressure will stabilize

2. Belly will decrease in size

3. A successful line will be placed

God is good!  We don't always understand the plan, but HE is good!  

Post Cath Update

This is going to be a very brief update.  Emma is stable after her cath procedure.  She is still sedated and intubated (breathing tube still in).  We have yet to hear what the plan is for the rest of this week or in the future.  Right now, we ask everyone to continue to pray for her and us as we try to figure some things out.  A more detailed update will come more than likely later in the week.

God is good, all the time.  And all the time, God is good.

-Scott

Cath Update 2

Emma is doing well and is stable in the cath lab.  They are currently coiling collateral veins (veins that form to reroute blood to other places, often these are not good because it makes blood go away from the right paths).

The ENT scope did reveal that her left vocal cord is paralyzed.  We will learn more about what this means for Emma later in the day.

God is good!  All the time!  God is good!  Please continue lifting our girl up in prayer. 

Cath update 1

They just took Emma back to the cath lab.  They will do the ENT scope, cath, then place the PICC line.  Thank you for the continued prayers.

Fork in the Road: Back to the Cath Lab

It was a busy week for Miss Emma.  The team has been working to try to optimize Emma's cardiac function while managing her fluid balance.  This has proved to be a tedious task.  Emma's kidneys are not really appreciating the medications (diuretics), so we can't pull off as much fluid as we would really like to pull off.  The team also feels like we are at a fork in the road.  We are guessing on certain numbers at this point, and those numbers really effect how we proceed and how we medically manage Emma in the interim.  Therefore, the decision has been made to send Emma to the cath lab tomorrow.  As of right now, Emma will be second case.  Emma will also have a couple of other procedures done in the morning.  The ENT staff will scope her to check her vocal cords since all of her intubations to make sure it is safe to try to let her eat.  They will also be putting in a new PICC line because her old (that was placed in Dallas) started leaking today.


 So, tomorrow will be a big day for Miss Emma.  It will also provide information that will help Emma's team, and us, make the best decisions moving forward.  Thank you for the continued prayers as we move forward.  We are obviously anxious for what information will tell us, but we know that God is in control and that he will lead us through this next storm.  God is good!  All the time!  God is good!

New Emma T-shirt (toddler version) Heart Hero

Here are the new Team Emma t-shirts! A big thank you to Stephanie Mora for designing them for us. The really neat thing about these shirts is that the "heartbeat" on the front is Emma's actual EKG reading....her heartbeat. All the instructions are on the website, but let me know if you have any questions. The shirts are really soft and comfy, but run a little small so read the sizing chart carefully.







New Emma T-shirt (toddler version) Heart Hero




http://www.booster.com/team-emma-tshirt (YS-Adult 3XL)